Epilepsy advocates seek extra support for people with chronic condition

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ADVOCATES have highlighted the financial impact and challenges facing people with epilepsy in the lead up to an awareness raising month for the chronic condition.

A Deloitte Access Economic report, The Economic Burden of Epilepsy in Australia 2019-2020, released in February showed that 14,727 Western Australians lived with active epilepsy.

The report said 1507 cases of the common neurological condition were diagnosed in WA each year and the total annual cost of epilepsy to Australia was about $12.3 billion for the 142,740 Australians living with epilepsy in 2019-2020.

Epilepsy WA said the annual cost in WA was $1.27 billion, including lost productivity, impacts on healthcare and reduced quality of life.

“Epilepsy in Australia really needs to be brought out of the shadows – we need to shine a light on this common yet often misunderstood condition, ” chief executive Emma Buitendag said.

“Living with epilepsy can really have major challenges, even those with well controlled epilepsy may be quietly fighting multiple battles and depression is commonly experienced.

“Those living with epilepsy may also experience discrimination, fatigue, memory issues and other challenges – support services such as the ones Epilepsy WA provides are essential.”

Marangaroo resident Renee Evans, who has had epilepsy for 27 years, has been advocating for extra support for people with the condition and appealed for more people to sign her online petition.

Mrs Evans did a similar petition last year which was tabled in Federal Parliament with 528 signatures and she hoped more people would sign this year’s petition before the March 4 deadline.

“With so many people with epilepsy not legally considered disabled, we get very little assistance,” she said.

“I believe epilepsy is a disability and should legally classified as one for our assistance and protection.

“People with epilepsy desperately need assistance getting and keeping jobs and help raising awareness for epilepsy to stop the stigma.”

Camera IconRenee Evans is doing a second petition seeking more support for people with epilepsy. David Baylis www.communitypix.com.au d498102 Credit: Supplied/David Baylis

Health Minister Greg Hunt responded to the first petition last June, saying the Federal Government was committed to addressing the impact chronic conditions, including epilepsy, had on the community.

Mr Hunt said the government would provide $20 million over four years for the Epilepsy Smart Australia program, which would
ensure people with epilepsy have access to information relevant to their age and condition.

He said the new program would also ensure workforces understood epilepsy and responded to the needs of their workers, an
and that school-aged children with epilepsy could achieve a better education.

The spokesman said the government had provided $1.3 million over three years (2018-19 to 2021-22) to Epilepsy Action Australia to establish and operate a dedicated national telehealth service for people affected by epilepsy.

“Treatment and management support for Australians with chronic conditions, including epilepsy, is provided through ongoing universal health programs,” he said.

“This includes rebated services through the Medicare Benefits Schedule and subsidised medicines through the Pharmaceutical Benefits Scheme (PBS).

“There are 19 medications available on the PBS for the treatment of epilepsy – in 2018-19, the Australian Government spent more than $77 million on PBS medicines for the treatment of epilepsy.”

Epilepsy Action Australia plans to advocate for greater recognition for epilepsy as a spectrum disorder in March because the 250,000 Australians living with the condition experience it differently.

“In some cases it is genetic, but epilepsy can also be acquired by things such as head injury, infection or stroke, and it can occur at any point in a person’s life, from infancy to old age – many people do not know why they have epilepsy.

“Epilepsy also varies in severity and frequency from person to person and seizures differ as well, from a momentary pause and staring into space to full body convulsions.

“There are actually about 40 different types of epilepsy which can either involve the whole brain or part of the brain.”

Epilepsy WA provides a telephone information line, public loan of seizure alert technology such as bed mats, runs community support groups and events, works to reduce discrimination and trains teachers and school staff beyond first aid with its Epilepsy Smart Schools program.

The organisation wants people to dress up in purple and join its Purple Walk 4 Epilepsy WA event on March 29 at Curtin University – visit www.epilepsywa.asn.au.

Epilepsy Action Australia aims to raise $250,000 on Purple Day to go towards creating a range of technology solutions and e-resources.